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Objectives: This study aimed to identify facilitators and barriers to parent-child communication in pediatric palliative care, providing insights for medical professionals developing targeted interventions to enhance parent-child communication and…
Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a…
Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in…
AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in…
Aim Paediatric palliative care (PPC) is an ever evolving speciality in Ireland. It is recommended that all healthcare professionals involved in the care of children living with a life-limiting condition need to have an understanding of the core…
Problem: The COVID-19 pandemic hindered access to routine healthcare globally, prompting concerns about possible increases in pregnancy loss and perinatal death. Background: PUDDLES is an international collaboration exploring the impact of the…
Problem: Realizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The…
Background: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare…
Background: In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care.…
Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper…
Objective: Responding to the National Institutes of Health Working Group's call for research on the psychological impact of stillbirth, we compared coping-related behaviors by outcome of an index birth (surviving live birth or perinatal loss -…
Abstract Background: Evidence to guide intrapartum care when an unborn baby has died is limited. Aims: To explore parents' experiences of care during labour of an antepartum stillbirth. Materials and methods: Semi-structured interviews with 18…
Abstract The aim of this study was to explore the experiences of pregnancy loss in first-time expecting fathers. Participants were 14 Jewish Israeli men who experienced pregnancy loss that occurred at least 3 months before their participation and who…
Outcomes: 1. Identify key actions that help prepare families for the dying process. 2. Consider how the defined key actions may apply to other settings of practice. Key Message: Preparing families for end-of-life symptoms and circumstances may help…
Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite…
Abstract Background Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of…
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…
Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide…
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual…
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To…
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…
BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE(S): This study explored US…
The objective was to know the vulnerabilities experienced by family members/caregivers of children with a chronic. Qualitative research supported by the theoretical framework of the French philosopher Rosello Un which 15 family members/caregivers of…
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative…
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as…
Aims and objectives: To explore culturally and linguistically diverse men's experiences of support after perinatal death, including barriers and facilitators to support and how healthcare providers, systems and policies can best support families.…
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language…
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick…
Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study…
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make…
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…
OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges…
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care…
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT…
